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difficulty getting doctors to take me seriously

I have been telling my VA doctors about every symptom I experience and they act like I'm full of baloney. My husband has witnessed these episodes and goes to my appointments with me but it makes no difference. Because you can't get in to see a neurologist without referral I will never get answers. I am a 55 year old woman who has suffered with the symptoms of MS since 1997 but because of the lack of lesions on my brain they say no diagnosis can be made. I have not had a spinal tap or a MRI of my spine and I'm pretty sure the VA's MRI machine is very old so it probably couldn't find anything. I had an episode 2 days ago when I woke up. My husnand thought I was having a stroke but I was sure I wasn't because this has happened before. I felt and acted drunk as as skunk. Staggering and slurring my speech. It lasted for about 3 hours plus I felt this way at bed time the night before but not as intense. I was out of it all day. Felt like I had been dipped in concrete and it was an effort to move. We were on our way to my moms and I told him if it didn't pass we would go to the hospital. Going to the hospital is nothing like how it is on the tv show House. On tv they do every test and keep you until they figure out whats wrong. In real life they check you out then send you home with instructions to go to your family doctor and thats it,  they are done with you. I'm mad,  frustrated,  confused and just at the end of my rope. Thursday I'm going to the Seattle VA hospital and camp out until they arrest me or or take care of me. I don't know what else to do. I need answers as I'm not getting younger and want a better quality of life in my last years. I have the shock feeling down my arms,  tingling and numbness in toes,  hands,  face, and legs,  feelings of hot and cold in my legs like something hot or cold has been put on them,  facial numbness (stroke ruled out),  paralysis in both legs and sometime only one leg when waking in morning. Extreme fatigue,  light sensitivity,  eye pain,  bladder problems,  lack of sexual desire and feeling,  muscle tightness around chest,  stomach and ribs,  muscle spasms so violent that I snapped into the fetal position and hit my head on my knees and saw stars. I also had my arm spasm and hit me in the face and I clawed a chunk of flesh out of my forehead with my fingernail. Spasms in my legs that cause me to kick the footboard of my bed and kick my hubby a few times. These occur at night as I sleep. It is ridiculous that it takes so long for a diagnosis. 10 years is way too long to suffer waiting for a doctor to decide if it's MS or not. Needless suffering for all who go through this. I have been to neurologists since 1997 when they first suspected MS. But because of no brain lesions no diagnosis. But they haven't even done other tests to confirm or rule it out such as a spinal tap and MRI of my spine. Just seems incompetent on their part. Anyone else have this problem and if you did did you solve it?
5 Responses
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667078 tn?1316000935
I hear your frustration. If you have a GP they can do a neurological exam. Even on the out side without lesions on a MRI it is hard to be diagnosed. I had lesions on my first MRI and 4 neurologists said it looked like MS. It took me two more neurologists and two years for a diagnosis. Have you asked why you can't have a LP? I realize it is the VA. Have you contacted your congressman? Sometimes that helps. Other than that I do not know what to say. Too bad you could not see a MS Specialist on the outside. They may not have MS Specialists at the VA.

Alex
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
To be perfectly honest, what I typically look out for was not actually something you mentioned...........this would be your neurologically abnormal 'clinical signs',  which are significantly more important and or suggestive diagnostic evidence than a persons often less suggestive symptom list.  

The clinically abnormal neurological evidence, is what makes a persons symptoms more suggestive, that a neurological condition like MS is what's possible. If your neurological assessment(s) have not found any neurological 'abnormalities', realistically a neurological condition would be a 'less likely' explanation for the symptoms and some other medical explanation would be more likely.

Keep in mind that whilst MRI strength does make a difference, the MRI is just one piece of diagnostic objective evidence, it would make a significant amount of difference if you had 'any' objective evidence suggestive of a neurological causation.  In the grand scheme of things it's important to know what over the 18 years, has shown up as abnormal in all the tests you've had, including your neurological assessments.

There are enough issues that you've mentioned which could be spinal related, not necessarily spinal cord lesions though or related to MS, but I think a spinal MRI would be a good idea if you can work through the VA hoops. There should be some things in your medical records which will help point in some direction, so worth checking into that and considering looking into the VA related support groups to help with ideas etc.

Sometimes it's better to not mention that you think you have MS, MS has so many associated symptoms and a lot of medical conditions cause similar or some of the very same symptoms, so whilst it may seem like MS it's more often than not one of the mimics instead. MS is probably one of the most common neurological conditions people google and then get anxious about having, so it's generally not a good idea to mention MS if you can help it.

Cheers..........JJ

Helpful - 0
5112396 tn?1378017983
I'm so sorry you're having such a difficult time of it. I know a lot of our forum members have had to deal with the unique challenges of the VA system.

Have you had a recent (the last two years or so) clinical neurological exam? A proper one? I ask, because for many of us, the signs are there and the MRI and LP become more a case of back-up evidence.

If they are dragging their feet because of cost (just a guess. I really don't know), then I would certainly hope you'd at least get a referral to a neurologist for a new, good ol'-fashioned clinical exam.

Some of what you mention could be related to something like MS, but also many, many other conditions or issues. Perhaps part of the problem is you don't have any of the classic presentations, such as optic neuritis. Some doctors have blinders on with non-classic presentations, strictly due to their statistical rarity.

Don't get too romantic about notions of House! Remember, they usually nearly kill their patients whilst barking up the wrong diagnostic tree for 3/4 of the show.

All the best for Thursday. I'll be thinking of you!
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Hi and welcome

Many people with MS have visual and or cognitive issues, reading large blocks of text is extremely difficult for people with MS to read and or comprehend, so i am reposting with helpful spacing.....

"I have been telling my VA doctors about every symptom I experience and they act like I'm full of baloney. My husband has witnessed these episodes and goes to my appointments with me but it makes no difference. Because you can't get in to see a neurologist without referral I will never get answers.

I am a 55 year old woman who has suffered with the symptoms of MS since 1997 but because of the lack of lesions on my brain they say no diagnosis can be made. I have not had a spinal tap or a MRI of my spine and I'm pretty sure the VA's MRI machine is very old so it probably couldn't find anything. I had an episode 2 days ago when I woke up.

My husnand thought I was having a stroke but I was sure I wasn't because this has happened before. I felt and acted drunk as as skunk. Staggering and slurring my speech. It lasted for about 3 hours plus I felt this way at bed time the night before but not as intense. I was out of it all day. Felt like I had been dipped in concrete and it was an effort to move.

We were on our way to my moms and I told him if it didn't pass we would go to the hospital. Going to the hospital is nothing like how it is on the tv show House. On tv they do every test and keep you until they figure out whats wrong. In real life they check you out then send you home with instructions to go to your family doctor and thats it,  they are done with you. I'm mad,  frustrated,  confused and just at the end of my rope.

Thursday I'm going to the Seattle VA hospital and camp out until they arrest me or or take care of me. I don't know what else to do. I need answers as I'm not getting younger and want a better quality of life in my last years.

I have the shock feeling down my arms,  tingling and numbness in toes,  hands,  face, and legs,  feelings of hot and cold in my legs like something hot or cold has been put on them,  facial numbness (stroke ruled out),  paralysis in both legs and sometime only one leg when waking in morning.

Extreme fatigue,  light sensitivity,  eye pain,  bladder problems,  lack of sexual desire and feeling,  muscle tightness around chest,  stomach and ribs,  muscle spasms so violent that I snapped into the fetal position and hit my head on my knees and saw stars.

I also had my arm spasm and hit me in the face and I clawed a chunk of flesh out of my forehead with my fingernail. Spasms in my legs that cause me to kick the footboard of my bed and kick my hubby a few times. These occur at night as I sleep. It is ridiculous that it takes so long for a diagnosis.

10 years is way too long to suffer waiting for a doctor to decide if it's MS or not. Needless suffering for all who go through this. I have been to neurologists since 1997 when they first suspected MS. But because of no brain lesions no diagnosis. But they haven't even done other tests to confirm or rule it out such as a spinal tap and MRI of my spine. Just seems incompetent on their part.

Anyone else have this problem and if you did did you solve it?"
Helpful - 0
Avatar universal
Well shoot, I can't say anything because I'm in the same boat, having weird symptoms, I get episodes of a sort, and Yep, same thing for me at the ER, "nothing we can do here since it isn't urgent life threatening issue, go see a GP or find a Nuro".

I complained like heck and did get the ER doc to give me a referral to a Neuro, but he was kind of a quack, didn't even open my file or anything so I asked him to send me somewhere else, I am currently still waiting for the call from the next office.
Maybe try that??

I have heard that 5% of people don't get brain lesions, and I thought I read something interesting on that before about something with T cells crossing the blood brain barrier, (someone correct if I'm wrong)

But that does cross my mind too. It could be other things too, but I have no idea what.

I wish you well, and luck
Helpful - 0
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